Songs In the Night

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It’s only natural to wonder why things happen the way they do. Some things can leave you in a state of confusion. Some things can leave you dumbfounded. You may not understand. You are lost in a sea of torment and wonder if you’ll ever find the way out.

All of us have experienced pain of all sorts. Pain of a broken pain. Of childbirth. Of a bee sting. But physical pain doesn’t hold a candle to the mental and emotional pain some of us find ourselves experiencing. The pain of divorce. The pain of watching someone you love suffer. The pain of a wayward child.

There is one pain I have never experienced and I pray that I will never have to. A pain that I can only imagine is so great, only the tender fingers of God can wipe the tears it produces. The pain of losing a child.

A year ago my son and daughter in-law moved from Oregon, where my husband and I live, back to Idaho in anticipation of a better job opportunity. It was a good move – for them. For me? I has spend the prior five and a half years watching my granddaughter every day, all day long and the last six months watching and caring for her little brother, my grandson. When my son and his wife moved, along with mygrandchildren, I truly meant it when I told them they had my blessing. What I wasn’t ready for was what it felt like to have them gone. I literally felt as if my heart had been torn out.

I have a dear friend who had her heart torn out almost two years ago this next February when her daughter was suddenly, unexpectedly, tragically killed. Many of you may have heard. Many most likely know whom I speak of.

Judy Hensley. Mother of Carol Michelle Hensley Singletary.

I have just finished reading Judy’s book, a memoir of sorts, of Carol’s life. A tribute to her spirit. The fire inside her. But as I read it, it became more than that. Throughout this past year, the times I have spoken with Judy, my heartbreak over my loss seemed menial. After all, my kids and grandkids merely moved away. They weren’t taken without my consent. I can visit them, talk to them on the phone, see them through Facetime. Judy can’t. Carol’s gone from this world – a hard fact Judy can’t change.

During our late night or wee hours of the morning chats, there have been tears. They have been prayers. There has been searching. One thing I remember thinking and may have said out loud, is that God is going to use this amazing woman for his glory. Through the pain, the searching for answers, the tears – the grief – he is going to use this woman.

He’s going to bring about something beautiful…

Life is full of messy. Messy relationships. Messy jobs. Messy diseases. Most of which we have no control over, but because sin is a part of life and always has been, life is and always has been messy. But I continue to learn that there is a reason for everything. I may not ever know what the reason is, but there is one. If you believer in an almighty, sovereign, omniscient God (I do), then you most likely believe that thought we may not understand, God allows things to happen. And sometimes those things are not welcome.

Like losing a child. No matter how old.

But, because life is continually messy – and has been since the Adam and Eve episode – there will always exist someone who has gone before us and ‘been there, done that’. Someone who never signed up for messy but was thrust into the heart of it and in the process had their heart torn apart.

Someone like Judy.

There is beauty in the broken and I have not seen it more evident than in her life. Broken, crushed in spirit – wondering and asking why – still she sings.

In her book about Carol, Judy shares a conversation she had with a friend who has gone through a similar experience. They reference the biblical account of when Paul and Silas are imprisoned and how at the midnight hour the two men are praying and singing praises to God. Judy and her friend talk about the verse that says, “…and the prisoners heard them.”

Somehow, the prisoners heard them… they were not simply singing like we might do in the shower. They were not singing a bar or two to themselves. For the other prisoners to hear, they had to have been singing with spirit (quite literally!). I am in awe not at the fact that the prisoners heard them, but that they were singing praises and most likely – singing them loudly.

In her own strength (and she will tell you this herself) Judy has not survived but it has been only by the merciful compassion of a heavenly Father working through His presence in her personally or through the outreach of others toward her. And it’s because of His relentless mercy that she is learning to sing in the night hours. The times that are so incredibly dark and the sun seems it will never shine again. You know – the times when you feel imprisoned to the pain of this world and it feels as if it will never let up. Songs in the night are miracles of praise because when you least feel like singing is when you need to do it most.

Sometimes having a chronic illness leaves you feeling imprisoned, broken, and grief-stricken in its own messy way. But there have been those who have ‘been there, done that’ and are a bit further ahead on the journey and will come alongside of us in order to encourage and teach us how to learn to sing in the dark of the night.

Judy has been nothing short of a illuminating light in the midst of a horrendous storm. She has been proof that while we may never understand why God allows certain things to come about as He does, He does not nor will not abandon His children in their time of need. She is proof that praise is possible in the darkest of times because the light that had already been shining in her life is even brighter now.

If you want to be uplifted, encouraged, and given a renewed sense of hope in a great God,, her book, Carol’s Smile, is available through Amazon or Barnes and Noble stores. And no, she didn’t pay me to write this. She’s sending me Oreos instead.

When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God, the Holy One of Israel, your Savior. …you are precious to me. You are honored, and I love you. Do not be afraid, for I am with you.” Isaiah 43:1-5

2014 Holiday Gifts/Ideas for People with Parkinson’s Disease

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It’s that time of year again and so, here’s the 3rd annual list of great ideas for gifts for people with Parkinson’s disease and is suitable for those who live with other chronic illnesses. If you have ideas/suggestions not on the list, feel free to add to the list by leaving a comment.

  • Because people with PD and/or otherr chronic illnesses ingest so much medication, it can slow the outflow process. In other words, they can easily suffer from constipation. The Squatty Potty is a help to those who find it difficult to have bowel movements. For a list of Squatty Potties and their like-competitors, go here: Squatty Potty and such
  • Many people with PD who loved to write without the aide of a keyboard, sorely lose out when it comes time for sending (handwritten) notes any time of the year. Weighted pens (and pencils) are a god-send to those with PD, as they give more stability to a trembling hand.
  • A sturdy, plastic cup with a straw is a great and simple gift and there are so many fun ones to choose from. These are great for people with PD. They’re not only fun, but the straw stays put and are perfect since most PD patients do better using a straw when they drink. For the healthiest choice, choose BPA-free.
Readers Choices:
  • “One of the gifts I am proudest of (and has gotten most use, I think!) for my step-father with PD was an ink stamp of his signature. One of the first things he had trouble with was signing his name, and the stamp works perfectly on cheques, documents, etc. I took a high resolution scan of the signature from before he had the shaking, and then went to an ordinary business solutions website, [Staples, Office Max/Depot, etc) and voila! Now he can sign his own name and it looks like it used to.” (Note: Get the signature during a “ON” time of medication for best results for the best signature.) -submitted by Anonymou
  • “…for men who have always cut their own hair– military and men of a certain generation who just like to avoid the hassle of a salon. Remington makes a cordless short-cut clipper that is easier to hold and works just like a brush, specially on the back of the head. It’s a simple tool but keeps one more…task easier and in the home.” -submitted by Erin
  • “My wife was diagnosed with early onset PD early 2014 at the age of 43. She also has recently been diagnosed with Lupus. I purchased a Tens unit and an extra large 12×24 heating pad to help alleviate her aching muscles and joints. I will get her a few gift cards for massages from the local spa. I am also researching a percussion massager so I can help when she has a flare up and isnt feeling her best.” -submitted by Big Jake (Note: Please consult your doctor first before using the Tens unit for placement of pads if you have had DBS.)
  • “My father in-law has quite advanced Parkinson’s and I’ve just bought him a DAB radio. It will be ideal for when he’s not feeling to good too get out of bed or watch the TV. I think you can feel very lonely with Parkinson’s and hopefully the radio will help.” –  submitted by Claire

     

    And last but not least, a greast stocking stuffer would be a tube(s) of Arnica Gel. This works wonders for stiff necks/shoulders. It comes in cream (not greasy) as well, but the gel dries really fast. Both the gel and the cream work equally well. No fragrance. This really helps the stiffness in the neck which in turn helps to reduce the headaches associated with PD. I can attest to this fact!

    For a list of gift ideas from previous years, click here.  And don’t forget to leave a comment if you have a suggestion.

Thanks-giving

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The other day I wrote a post on giving thanks in all things over on my author site.  It was based around 1 Thessalonians 5:18, where, as followers of Jesus Christ, we are admonished to rejoice always, pray without ceasing, and in all things – to give thanks.

You have Parkinson’s. Someone you know has Parkinson’s. You have a chronic illness other than Parkinson’s. You have gout. You have a chronic illness and gout and a friend with Parkinson’s and you can’t find the TV remote and you’re supposed to give thanks?

Sure. Right after you eat the last two Oreos because after all, you have  a little milk left and studies have shown (studies I conducted personally or with a group) Oreos have been proven to help you feel better. But you gotta have milk…

There are just some things in life that are hard to give thanks for. But, it doesn’t say give thanks for everything, it says, give thanks in everything. And there is a difference.

Giving thanks for all things, is an act of gratitude, of “thanks-giving” upon recognition of a gift having been given to you. Giving thanks in all things con notates situations and circumstances. Is it possible to be in the throws of say, Parkinson’s disease or some other chronic or terminal illness? I believe so. Is it possible to be able to give thanks in the midst of some battle while not being able to give thanks for it? I know so.

You, undoubtedly, have read that people have actually been able to see the blessings that God has brought about through their illness or disease. And they have gone on to use those blessings as opportunities to bless others who are going through similar circumstances. There is no one more qualified to comfort the hurting except the one who has already been there, done that. There is no one who can understand better that pain, confusion, sorrow, and grief. And there is no one better to help get through the grief than the one who has already experienced grief itself. 

How do you give thanks in all things? I believe it takes knowing the One on whose ears the thanksgiving will rest. The One who is at work to bring together everything that happens to us – good and bad – for our good. He doesn’t allow situations and circumstances in our life to defeat us, to beat us down, to cause us to grow weary. We may feel defeated, beat down, and weary, but those are feelings and our feelings are not always accurate. Sure we can grow weary and get beat down over what life serves up but the fact is – we are not defeated. God is a god of victories and He is fighting for us.

Giving thanks in all things constitutes believing that God has your best interest at heart. Believing that He is sovereign and in control, regardless of what is going on around you. It means believing that He is faithful and can be trusted. And if He is faithful and trustworthy, surely our response will be an attitude of thanksgiving because He knows what He’s doing and what He’s doing is taking the bad – diseases, illnesses, abuse, severed relationships and more – and he’s working through the circumstances to bring about good. Good meant for us. 

I believe that eventually, giving thanks in everything can lead to giving thanks for everything. Because you have trusted His faithfulness, and because you have rested in His sovereignty and you have seen the blessings from being broken yourself, then maybe – just maybe – you’ll be able to give thanks for everything.

 

 

 

Clinical Trials Opportunity

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A couple weeks back, I was invited to consider becoming a ‘Clinical Trials Ambassador’ for a brand new entity known as… 


CureClick is a community-powered platform that revolutionizes the way companies find volunteers for their clinical trials. CureClick leverages WEGO Health’s 100,000-member network of health influencers to disseminate trial information to thousands of health communities — effectively reaching millions of patients at lightning-speed through trusted channels.

 

Founded by Fabio Gratton  (CureClick’s Chief Executive Officer), Cure Click’s mission is to assist in “accelerating the progress of medical advancements by increasing the speed with which clinical trials are completed.” Their mission also serves to “leverage the power of crowdsourcing, to share clinical trial information, and connect patients with relevant treatment options.”

Acccording to Brian Poeschl, CureClick’s Chief Operating Officer,  there are almost 150,000 current ongoing studies in over 187 countries. Out of those studies, 66% fail to recruit people needed to make that study accurate or happen at all. Over two-thirds of research sites fail to meet their original enrollment for a given trial. This, he says, slows down medical progress.

When a clinical study is in progress, it is critial to focus on the patient’s finishing that trial because “the continued develpment of innovative treatments is totally dependent on the ability of research organizations to rigorously test and validate their work.”

So, why do some studies fail to recruit, not finish, get slowed down? There are two key reasons: awareness and fear.

Awareness is critical as it leads to recruitment. For example, 16% of cancer patients are aware that trials are available, while only 43% of those that know actually participate while the other 57% do not.

Fear is the other reason that makes recruitment difficult. Fear of the new treatment not being as good ranks highest but fear of side effects from the study also ranks high on the fear list when it comes to contemplating being a part of a clinical trial. Some fear they won’t meet the acceptance criteria, they have a fear of a potential placebo, fear as to whether their insurance company will cover expenses, and they worry about having to relocate away from their families.

Cure Click wants to eliminate that fear and raise awareness in order that participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research.

After reading their informational material and going through an educational program for training on how to get the word out, I decided I was on the same page as they were: having the desire to raise awareness for studies that are available and pertinent to the Parkinson’s community (in my case) and hopefully dispel any fear any of us face when it comes to considering participating in a clinical trial.

So, all to say – I will now and again, be posting news about available studies through my website and Facebook groups when the opportunity arises. I will not be strict with publishing information about Parkinson’s specifically, but will filter through what comes down the pipeline for other conditions that can often go hand in hand with PD as well (such as dystonia, restless leg syndrome, dementia, etc).

If you’d like more information as to why I have taken on this ‘role’, you can click here to read more: My Relationship to Cure Click.

If you have any questions, feel free to email me at  parkinsonsjourney@gmail.com  .

Journeying with you,

Shrri

Coming to the End of ME

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“This past year I could feel myself slipping away. Tormented by daily how’s it going to happen, when’s it going to happen  and what’s it going to look like (in terms of my having Young Onset Parkinson’s disease). It can feel all-consuming. Add the natural element of depression that you get for free when you have PD and you’ve got the beginnings of a devouring darkness that vies for your joy, your hope, your soul, your very being.Light_in_the_Darkness.JPG

Because you are in the wrong frame of mind to hear the Truth but the right frame of mind to sink deeper into an endless hole of hopelessness, you dwell on the lies you believe – those others have spoken to or about you and those you tell yourself. You believe these lies above what you know is Truth because they can be louder. You run through your checklist of disappointments that you’ve been not only to yourself, but to others as well. Disappointments of the should-haves, the could-haves, the would-haves. Regrets and failures.

You are so covered by darkness at this point you can’t hear the Truth. You can’t see the Truth. You’re not sure if you even know the Truth.”

I started  a post yesterday with the words above but it went in a direction different than what I had  thought. Now I am drawn back writing out the post I was thinking about to begin with   – that of not being sure if I could hear or see or even know the truth in the midst of the darkness I seemed to be enslaved in.

My main struggle seemed to be with my disease. I had a rough beginning to my year when I not only realized but had to accept the fact that the neurologist I had, who  had also become a friend, would not be able to continue as my doctor. Ten years under his care. 60 to 90 minute appointments averaging every three to four months over those ten years, two surgeries, and visits that felt more like two friends having tea and cookies  than being  injected  with Botox for stiffness  and pain 10-15 times  per  visit.

I didn’t want to start over. He knew me. He diagnosed me correctly. Told me I didn’t have Lupus (yea!) but had Young Onset Parkinson’s disease (oh boy!). Told me he’d be with me ’til the very end…

But our end looked different than I expected. I pictured me ushered into my last visit with him in the confines of a wheel chair, drooling all over myself, slumped over, nodding yes because I can no longer control the tremors with medications or a zap from the wiring in my brain.. Because of my deteriorating state,, people go about thinking I am  so friendly and always waving at them (tremors of the arms and hands) and so agreeable because I’m always nodding yes (tremors of the head, neck, face).

That’s not how it was a year ago. A year ago I began to think this was becoming a burden. The medical bills, the distance,  the drive.

Then I attended a conference where my doctor was speaking and found out he had been  deathly ill and was fighting a  diagnosis  of his own . The next month I went to my regular scheduled appointment and he looked worse than the month before. After my appointment he was admitted back into the hospital for the fifth time in six months and followed up with a three to six month sabbatical to get well. While he was trying to recover, I was sinking further into darkness.

Why was it so hard to let go?

I asked myself that question constantly. Was it because he had become more than the kind of doctor this world seems to be overflowing with – ones that have lost sight of the patient and have turned to production and pushing papers? Was it because he had become a friend? Was it because he really did know me so well? Was it because when he said he’d be there through my first brain surgery he really was (even though he didn’t need to be)? Was it because when they’d wake me to test the placement of the wire, he was right there by my side, holding onto my hand? Was it because I wanted him to be part of the how’s it going to happen, when’s it going to happen and what’s it going to look like – you know – till the end, like he said? Like I pictured?

I was going to be that little old, agreeable, friendly lady in the wheel chair, not the patient who worried about her doctor who was fighting a battle all his own. While my prayers increased on his behalf, so did my anxiety. I knew things weren’t getting better with me physically and knew my medications or my DBS (Deep Brain Stimulation) unit needed adjusting – at least. I had to let go.

I made the call I had put off for too long in hopes of getting my way and made an appointment with a highly recommended neurologist/Movement Disorder Specialist  in Eugene – only three and a half hours north. A much shorter distance than driving from Southern Oregon to Phoenix or flying to Minneapolis and back.

My first visit was hard. Nothing unfamiliar as far as testing and questions. But it was a reminder of what I had lost.

My doctor.

It was nearing the end of the appointment when my new doctor began to check the settings on my DBS unit. Something wasn’t registering correctly and eventually I was sent for an x-ray where it was discovered the first DBS wire had somehow been broken. 

While that fix-it surgery was harder on me than the first two surgeries, it affirmed in me the fact that God is in control and knows what’s best and… I am stubborn.

I seem to hold on for far too long that which God is trying to pry loose from the clutches of my fingers. I sometimes felt like a kicking, screaming child wanting it my way. Who was going to be there until the end?

I will.

Who was going to be part of the how’s it going to happen, where’s it going to happen, what’s it going to look like  and who was going to know what to do  about it?

I heard it again…

I will.

I sat in the  doctor’s   office   and a peace came over me  and a light began to fill the darkness as  I waited for confirmation that the DBS unit was  now in right, working order.   The doctor made adjustments that day, the following week, the week after that and in two days she’ll adjust again. And I will be there. Not because those weekly trips are actually doable, but because I have learned this year – again – that God is in control and has His best in mind  for me, even though I can be stubborn. When I let go, He is free to work.

I haven’t felt this good in probably two or three  years. The other day I was speaking to a couple and the conversation led to my having PD. The gentleman said his father had PD. “He didn’t get it until the age of 62,” he said, “but he lived ’til 92 and it was only the last two to three years that were really bad from the PD.”

That’s not everyone’s experience, but that not a ‘bad’ experience (‘bad’ being relative).

I don’t know what my end will be like, when it’s going to happen, or if I’ll be harassing my caregivers from the throne of my bed or the confines of my nursing home wheelchair but I do know who’s going to be there with me – through it all.

He will.

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